hi I was dx with high blood pressure about 4 years ago. That is how my Pv was found through routine blood tests. I have never been able to get my bp under control for any length of time. It fluctuates a lot. Does anyone else have blood pressure issues along with Pv?
Hi, I had blood pressure before I was diagnosed with PV and I have to say since treatment (venesections) my bp is under control and back to normal, much lower than it used to be.
Hi Suki thanks for answering me. So your bp got back to normal after you had phlebotomies. I'm in the US. Blood draws are called phlebotomies here. Interesting. Zap
Hello Zapamania
I've had high blood pressure for years longer than I've had the P/V. I'm on Metatopril an hydrachlorthiazide for it and my pressure flucates also it runs anywhere from 120s/70s to 150s/80s an sometimes a little higher but not often. . . My phlebotomys don't seem to change it any.
Hello again zapamania. It is to my knowledge that hypertension can be associated with Ruxolitinib (Jakavi) as a common side effect. This is usually accompanied by perhaps some dizziness and headaches. The latter two are in fact very common side effects in their own right. I have never suffered hypertension but would suspect it needs separate consideration in your circumstances. Keep well and best wishes for 2017.
Peter.
Hi Randal happy new year. Thanks for answering . I've been having trouble regulating my bp for the past 6 days. I think my meds have to be changed. Going to cardio on the 5th. It fluctuates too erratically for no reason. Yesterday highest was 171/101. At that number I feel sick. I've been on Jakafi for about 2 1/2 months. This bp has been going on forever, so I don't think it's the Jak. Zap
In further response to your query about Hypertension. My wife has suffered from this for quite a number of years now. It is rarely stable and her BP readings go up and down like a yo-yo. She has discussed the problem many times with the GP and hospital experts and tried just about every medication available. No solution has been found for her predicament. She has recorded well over 200 on more than one occasion and needed hospital visits to calim things down. Some drugs work better than others. She has no connection with PV herself. It does seem that other people have the same difficulty. As far as we know there is no hereditary factor involved.. It does seem you should seek some more specialist attention for your Hypertension which can be very disturbing. Best wishes. Peter.
Hi Peter Happy New Year thanks for th info about your wife. It sounds like you're describing me. I have the same problem. I can be fine for 3-4 weeks and then bam 198/100. I've seen over 200 also. I don't use caffeine, alcohol and watch my sodium like a hawk. I've been to at least 7-8 different Drs. Gps, 2 nephrologists, several cardios. I've been to the er on several occasions just like your wife. I can't get an answer as to why. My son is a pharmacist and suggests an alpha blocker that's my next choice. Linda
Hi Linda. Thanks for the greetings .Yes, my wife has tried every drug they can think of, and more. There does not seem to be any explanaton on cause and treatment. She has been seen by some eminent doctors who certainly have tried their best for her. The GP has been very understanding. My wife can tell when her BP is playing up by it unsettling her well-being so she keeps records of her BP readings at home for the medics to peruse. We don't seem to be able to take things further. Her results can vary quickly whilst her diet is very controlled. Even suits my condition too!! I am unaware of a web-site that deals specifically with Hypertension but it is something I will investigate. Make a change from PVR. Anyway, wish you good health and success in 2017.
Peter.
Hi Peter yea your wife and I sound like twins. I can tell my bp is rising when I get a slight headache between my eyes and my n cj feels tight. I like your wife keep detailed records of my bp. I have my own machine, of course, and write down the readings in a notepad. Gotta be careful with how many readings I give to the dr. One commented that i take my bp too often. One said my machine can't be right. So at the next visit I brought my machine and asked that my bp be taken with their machine & then mine. Same readings within a point. I would be very interested in any info you might find. Please pass it on. Thanks Linda
Hi Peter just wondering did any dr ever mention pheocromocytoma to your wife? That came up with me. It's a tumor somewhere in your body that releases catacolamines and ephanepharines into the body which raise the bp. I might be spelling it wrong. I was negative. Just wondering. Linda
Hi zapamania. Yes, sometimes when my blood gets too high, I am at my doc office for something else, and they tell me my blood pressure is high.
Then, it goes down agsin, and isn't normally too high. Right niow, I am on two capsuls per day of Hydroxyurea. I can take my blood pressure every day, and it isn't too high.I believe that when it gets too high, it seems to raise my blood pressure. You shd take your blood pressure at home for two weeks and see if it is too high or not, if not, write it all down nd show your doctor. It's not good to go on blood pressure pills if it's not usually too high. Once you are on them, you have to be weaned off. Just a suggestion.
Good luck,
harrishill.
HI Linda. Thanks for your info. I would say that over the years my wife has had about every test possible and if any growth had been discovered it would have been documented. As far as Hypertension online is concerned I did check and found the only information of any detail was to be found by typing the word into a search engine. Wikipedia showed up best but it is a site very much visited and contributed to by medics, so it is somewhat technical in nature. You need to be able to get your head around some of the terms. Basically, there was no obvious relevance with PRV or its treatment. Hypertension is a huge issue with far too many variables to consider. There is no root cause but many possibilities can arise from other complaints and different parts of the human system. It is no wonder the medics struggle to come up with answers. If you do look at the information on the site you need to take it slowly and simply compare your symptoms with those described and correlate it from there. Whatever you do, it seems important that you do not do anything without your doctor being informed. It is a vast subject really., and mind boggling. Good wishes.
Peter.
Hi Peter Thanks for researching bp. I've tried myself and found it to be mind boggling. So I can see why Drs have a hard time matching the right drug to every person. My son (the pharmacist) said it really is a hit or miss type thing. There are hundreds of bp drugs and many different classes. Beta blockers, alpha blockers , ace inhibitors etc. so we'll see. Linda
Hi Harrishil I have a machine at home and take my bp a few times a day. I can be normal for weeks at a time and then out of nowhere a huge rise. I am on bp meds. I just don't know if they are the right ones for me. I really don't think it's related to the Pv. I've asked 2 Drs if Pv raises bp. One said yes, one said no. So go figure. Do they even know. It's so frustrating. Zap
Hello Linda. Just to say that my wife has over time been prescribed every possible drug for BP without any notable success. Not that none will treat her condition but that she finds they react on her unfavourably. She has tried all the blockers but cannot take them. I think she suffers an aversion to drugs treatment anyway. She tries them desperately but after a few days the reaction sets in. Frustrating. I am just pleased she doesn't need Hydroxycarbamide. Both the hospital and her GP have really tried.
Hi Peter I am your wife's double. I desperately try a new drug and in a few days th side effects set in and I go back to the old one. My son (the pharmacist) says I sabotage myself mentally. It's so frustrating to hear my friends on bp meds who are fine. Bp great no side effects. I guess I am lucky that I'm doing ok with the Jakafi. It's been about 2 1/2 mos now. Although I'm on 5 mg twice a day. I couldn't handle the 10 mg. I only lasted 3 days on HU. The body aches were unbearable. I guess she and I are highly sensitive to meds. Linda
Hi Linda. Yes, you are most probably right about BP. Most illnesses are personal and bearing in mind that even DNA is different to everyone there are bound to be differences in how people can be affected by treatments. It is simply down to which drugs you can tolerate best. I am still on Ruxolitinib 10mg x 2 daily and it keeps me ticking over nicely with no obvious repercussi0ns. Blood counts stabilised for the past 12 months and the side effects un-notiiceable so far. Early days maybe. I cannot return to Hydroxy that's for sure. It worked well for a number of years before it turned on me. I expect you have now settled with the Ruxolitinib (Jakavi) and found it more suited to you too. There are some more drugs in the offing on research but I know not when they will become available generally. The real answer is in stem cell transplanting but even that can be difficult for patients to deal with. Another subject really and still only on the horizon. Peter.
Hi Peter I didn't realize you are on Jakafi. I thought you were on HU. How did HU turn on you? I was only able to take HU for 3 dats. Couldn't tolerate it at all. The Jakafi isn't bothering mr. I'm shocked!!, as far as stem cell transplant that's a very risky and rough procedure. I don't think I could do it. Hopefully that won't be an option for me. Linda
Hi even my bp fluctuates I also did my bmb and jak2 which came out negative.Is there something I should know ?Please help me.